Learning to live with chronic pain and illness gracefully

Words of Wisdom

I’ve found a lot of wisdom in the last week or so, just when I needed it the most.

@RA_guy Tweeted:

For me, a positive attitude doesn’t mean that I hope my pain goes away; it means that I hope to be able to cope with this pain even better!

Much of my time lately has been focused on coping. What can I do to make this pain bearable? How much am I going to let it limit what I do? I am able to work through and around pain and exhaustion that in the past laid me flat, but I still have to respect my body’s limits and listen it what it’s telling me. I have a bigger arsenal of treatments now than ever before, and I am getting better at determining what will help at any given time.

But more than anything it is my mood and attitude that determines how I feel. I can be in pain and still be positive. I’ll never be all sunshine-and-smiles and I don’t want to be- I need to acknowledge the pain and suffering, if only to gently set it aside and move on. I can’t leave it behind, unfortunately, but I don’t need to keep poking at it constantly, just because it’s there. I am slowly getting better at this, I think.

Sometimes people as me “how do you do what you do?”
I have a few answers to that, the first of which would be, “What are my options?”
How do any of us do what we do? We just do it. We walk by putting one foot in front of the other, we breathe because we do. Are things harder for me than they are for other people? I don’t even know. It’s not like I woke up one morning and my life was different. This is the life I life accumulated to this point. It took me years to get to where I am right now. If I woke up one day like this, then yes, perhaps I would be in a position to question it all, but it didn’t happen that way.
So, how do I do what I do? How do I not? How do you do what you do?

I’ve had this question several times, and am just as much at a loss. But Jules continues…

…Well you just do it. You don’t think about the alternatives because for people like us there are none. Staying in bed all day just doesn’t cut it for us. I may stay in my PJ’s half the day, but I am going to get moving. If I don’t I am in more pain. I may not leave the house, but I have to move…

…If hiking my ass up and down stadium steps with my cane, with my lupus and fibro and burst ovarian cyst is inspiring to someone, that is great. You know what it is to me? It’s living…

…If I am an activist, so be it. I am doing it because I get up every day and I live a life. It may not be the life I would have chosen, but do any of us have the choice? No, we are all given little options over years and years and we end up where we end up and we do what we do with what we are given. What are our options? Wake up, take your meds, drink your coffee and do the very best with what you have. Your very best is just that, it’s yours. It can’t be compared with anyone else’s, it’s just yours. Mine is just mine.

How do I do it? I do it very well thank you… except when I don’t. Then I just try again tomorrow.

I don’t consider myself to be an activist, but as I continue to have these conversations, over and over, I am forced to acknowledge that I probably am. I am educating and passing along information, even if it’s just a retweet. I am an activist, just by living my life publicly. I would love for my illness to be invisible, but as I rely more and more on aids, splints and canes, I am asked more and more. As an introvert, this forced attention is painful in its own way. But as I answer, the idea that I might inadvertently help someone else is inspiring in ways that I hadn’t considered before. It’s a slow realisation, and something for more mulling.

When we are sick or worse, when we are caretakers to someone we love, the last thing many of us want to hear is “how strong we are.”…

…the endurance people bear during difficult times WEARS on people. It does not come from STRENGTH. It is our human endurance and it requires us to do what we do. We cope, we fuck up, we cry. We lose and gain and lose again. There is no “right way” to do illness. Not as a caretaker and not as a patient.

This echoes the sentiments in Jules’ post, although from the other side- a place of tiredness and frustration. I haven’t been a recipient of this comment yet so I don’t know how I would respond. Am I strong? I sure don’t feel like it. But I feel like I ought to be- to meet some ephemeral judgement by outsiders or myself. I fight this probably more than anything else, and I know that I’m fighting myself. This isn’t anything new, but a good reminder- I’ve seen so many times “Would you treat someone else this way? Hold them up to these expectations and be hard on them if they don’t meet them? No? Then why do you treat yourself this way?” It’s why I’m trying to focus more on compassion- not just for others, but also for myself.

In particular “…as best you can.” resonated with me- I hope she’ll forgive if I quote her en masse…

I love this phrase. It contains within it the biggest lesson that I learnt in my eight week Mindfulness-Based Cognitive Therapy course. When I started, I was determined to “do it right”. I swore I would never miss my home meditation practice, would attend every class, and generally be a model student. Halfway through, I had given up on my homework, and was thinking of leaving the course because I hadn’t lived up to my own expectations. My patient, caring teacher helped me to see that I had missed the whole point of the course: the aim was for me to learn to be gentle with myself, in fact to be generally less judgemental and more accepting of how things really are. You can’t fit in a full hour’s practice every night? Practice as best you can, for half an hour, ten minutes, even five. You feel uneasy doing a certain type of meditation? Explore that feeling as best you can, and once you have played with the boundaries of your discomfort, switch to a practice which seems a better fit for you. Your joints won’t let you sit on the floor for 40 minutes at a time? Sit on a chair, lie on your back; try a stool, a cushion, a beanbag; try moving meditation, mindful yoga, a walking meditation, Qigong exercises – practice as best you can.

I’ve tried to apply this philosophy to the basic business of living as a depressed person. For example, I know exercise is good for me, but when I am in the slowed-down state that is acute depression, moving my body around seems so difficult that it would be impossible for me to run or swim. So I exercise as best I can, giving myself credit even for a gentle stroll round the park or a walk up and down my own street. I know it’s best to eat healthily, avoid sugar and alcohol, etc, but when I’m very down I can only make the best food choices I can. I’m not always successful, of course; I still beat myself up fairly regularly for not doing “enough” exercise, or not eating “properly”, but then I try to bring myself back to common sense with this phrase.

This really gets to the heart of what I’m hoping to discover through my mostly haphazard Buddhist studies, and, in a way, what ties all these wise stories together for me. I can only do the best I can. Some days I come closer to my own ideal of what is my best, but if I don’t achieve it, I STILL did the best that I can- and therefore I achieved my goal. I need to let go and move on- lingering over what I didn’t or couldn’t do? Achieves NOTHING, and there’s far too much that I want to do to spend time on nothing.

And, just to make sure that I received the message, @BetsyBlondin tweeted:

Perfect example of how the journey is so much bigger than the destination; the trying IS the succeeding: is.gd/cSVnoy#DianaNyad

“It’s over. She lasted 29 hours in an heroic attempt,” said Elaine Lafferty, one of Nyad’s crew members, on Twitter.

On the same Twitter account, her team said that earlier in the evening Nyad was in the water, “surrounded by dolphins and a beautiful Caribbean sunset.” But, they explained, a strong wind “blew her 15mph off course.”

“I am not sad. It was absolutely the right call,” she told CNN.

And, @BeyondStuck Tweeted:

“If your compassion does not include yourself, it is incomplete.” ~ Buddha